Going into hospital can be an anxious time and for people with Parkinson’s it is important to be well prepared. Careful planning and making sure that the hospital staff are aware of your needs and how Parkinson's affects you can help enormously.
During your stay, if something is unclear to you about your care or surgery always ask questions and make sure you understand any choices to be made. If you feel that something is not being done as it should be, particularly if medication is being missed or given at the wrong time, ask staff to check your notes again and amend your care plan for other staff to see. Don’t feel a nuisance – everyone, including doctors and nurses, needs reminders sometimes. And remember, showing respect for staff and thanking them when they get things right can work wonders and make them far more willing to help.
Hospital routines can differ greatly from your daily life, and you may be nursed by people who have no experience of caring for those with Parkinson’s. This information is designed to help you and your carer to prepare for and effectively manage your stay. Much of the information can also be applied to going to a day hospital, or a care home.
There are two ways of being admitted into hospital – through a planned (or ‘booked’) admission or as an emergency. Whether or not you go to hospital for something Parkinson’s related, your Parkinson’s should be an important consideration for both your nursing care and medical treatments you receive.
Emergency admission procedures differ in each country but it is wise to think about what should happen if you are admitted to hospital in an emergency. Emergency department staff may not know a lot about Parkinson’s so try to provide as much information as possible about how the condition affects you – the more they know, the more they can help you with your specific needs.
It is a good idea to discuss with your carer or close family what should happen in the event of an emergency. Let them know where they can find important information – perhaps by the telephone, or in your handbag or wallet.
- Carry with you a list of contacts for your carer, close family and your doctor so that they can quickly be contacted.
- Ask for your own doctor or Parkinson's nurse to be contacted as soon as possible so that they can talk to your hospital care team and share information.
- It is important that staff are made aware as quickly as possible that you have Parkinson's and that it is important you take your medication on time. Make sure that your carer or close family are aware that they may have to be proactive in reminding staff about giving you medication on time.
- Keep an up-to-date medication record, which includes all the medication you are currently taking (not just for Parkinson’s) and what time you take each dose. Keep this with you all the time and let others know where you keep it. You could also leave photocopies with members of your family and carers.
- Show staff your medication record and explain what you take. Also list any allergies you have. Ask staff to keep a copy of this record in your notes and check they have recorded this accurately.
- Keep medication in its original packaging and make sure you have at least 24 hours’ supply so you don’t miss any doses.
- If you are allowed to administer your own medication, keep taking your medication as you normally would at home.
- Tell staff if you have had deep brain stimulation and show them your patient ID card.
- If you live alone you may consider having an emergency alarm in your home or on a device worn around the neck, which if pressed will notify someone at a 24-hour response centre that you need help. Ask your doctor or local Parkinson’s association for more information.
- You may also want to wear an emergency bracelet or necklace on which your contacts and important medical details are engraved. Again, ask your doctor or local Parkinson’s association for more information.
Preparing for a planned admission
If your admission is planned, you can prepare for your stay in hospital.
Keep a medication record
A medication record lists the medication you are taking and contact details for your healthcare team. This should include:
- all the medication you are currently taking (not just for Parkinson’s), including the dosage
- the brand and generic names for each drug – for example: co-beneldopa (Madopar)
- what time you take each medication and if you have any ‘wearing off’ symptoms
- any special requirements, such as needing to take a drug with food or water
- details of any medication you have taken before that gave you serious side effects
- the contact details of your doctor
- any problems you experience if you don’t get your medication on time, for example difficulty swallowing or increased risk of falling.
It is a good idea to keep this record with you all the time and let other people know where you keep it. You could also leave copies with members of your family or carers. This could help if you are unable to communicate in an emergency, as they can give the healthcare professionals the record on your behalf.
Make sure you keep your medication record as up-to-date as possible. Tell your GP, specialist or Parkinson’s nurse. If your admission is planned, it’s a good idea to tell your doctor in advance. You could:
- ask them to provide details of your medication regime to the healthcare team who will be looking after you in hospital
- ask them to talk to the ward staff about your medication needs and the importance of getting your medication on time.
Make sure people know you have Parkinson’s
You may want to wear a special MedicAlert bracelet or pendant that provides contact details and medical information, including what medications you are taking. This can be helpful if you are not able to communicate in an emergency.
Prepare extra supplies of your medication
Ask your doctor if you can store extra supplies of your medication. If you do keep spare sets, let other people know where they are in case of an emergency. Make sure you rotate these to ensure they are kept in date.
Medication should be kept in its original packaging – you will not be able to use your medication in hospital without this, even in an emergency. Check that the dosage written on the labels matches what you are actually taking.. You should have at least 24 hours’ supply to make sure you don’t miss any doses.
Carry our PD Doc card and Parkinson’s Passport
Use the EPDA’s online PD Doc that states, “I have Parkinson's Disease. Please allow me time. In case of an emergency, contact [contact details to be inserted]”. The document, available in 25 different languages, can be completed online, personalised and printed to keep in your pocket, purse or wallet. This can then be shown if you have difficulty communicating because of your symptoms.
The Parkinson’s Passport allows you to complete an information booklet about your medications and treatment and then carry it when you are out and about or travelling abroad.
Organise your home and work life
If you’re going into hospital and live alone, it’s a good idea to think about any arrangements you need to make such as cancelling deliveries or appointments. You may also need to arrange for a pet to be looked after. If you will be staying in hospital for any length of time, you may wish to tell your friends and trusted neighbours where you will be.
You may find it useful to put items like the TV remote control, your phone, and books and magazines on a table next to a chair or bed, where you may be spending a lot of time when you return home. Stock up on easy-to-prepare food and essential household items.
If you work, you may need to take time off for. Talk to your employer about your needs before you go into hospital. When you do return to work, you may feel more tired than usual. Your employer may be able to make some reasonable adjustments until you are fully recovered, such as flexible working hours or letting you take more frequent breaks during the day. You should also discuss a phased return to work if that’s likely to be necessary.
If your admission is planned, the hospital may invite you to a pre-admission assessment with a doctor or nurse. This is an opportunity for you to discuss your health, medical history and circumstances at home. You will be asked to bring in an up-to-date list of the medications you are taking. You should use the appointment to tell the healthcare professional you have Parkinson’s and what your specific needs are because of the condition. Talk to the healthcare professional about what medication you take and the importance of getting it on time.
During the appointment, you will be told about what will happen when you are admitted to hospital. If you are having surgery or tests, you may be advised not to eat or drink anything before your admission.
If the hospital doesn’t have a pre-admission assessment process, you can discuss your needs when you are admitted.
If you have an apomorphine pump, you should ask if a staff member on the ward knows how to administer it before you are admitted. Your doctor, or a Parkinson’s nurse if you have one, can discuss with the ward staff how to control the pump if they have no previous experience of this. Depending on hospital policy, your carer may be able to continue managing this treatment.
You should also make it clear if you are taking Duodopa – a type of levodopa that is pumped continuously through a tube which is surgically inserted in the intestine. As with apomorphine, your doctor or a Parkinson’s nurse can discuss with the ward staff how to manage your pump if they have no previous experience of this. Depending on hospital policy, your carer may be able to continue managing this treatment.
Deep brain stimulation
It is important to make staff aware if you have had deep brain stimulation surgery. MRI scans can only be used under very strict conditions, and antibiotics have to be prescribed when there is a risk of germs getting in to the blood stream, for example during dental procedures and certain treatments, such as diathermy or cardiac defibrillation, are contraindicated.
You should make sure you take your patient ID card when you go into hospital as this carries vital contact details if the ward staff have any further questions.
During your stay
Whether or not you can be responsible for your own medications in hospital will depend on the hospital you are going to. Some hospitals allow patients to bring in their own medication but only if the medication is in its original packaging. If you have time, contact the hospital to find out about their policy on self-administering medication and ask:
- Where will my medication be stored on the ward?
- If medicines need to be locked away, who will have the key?
- Who will update my drugs chart when I take my medication?
On the ward, keep taking your medication on time. Ask your doctor to contact hospital staff to explain the importance of you taking your medication on time. They may also be able to find out for you if the drugs you take are stocked in the hospital pharmacy. This will alert pharmacy staff if they are not already in stock.
Make sure your healthcare team is aware you are self-administering your medication and work with them to avoid over-medicating. If at any point you feel too unwell to keep taking your medication, make sure you tell a member of staff on the ward as soon as possible.
If you can’t bring your own medication into hospital, you need to make sure you get your medication on time. Don’t be afraid to remind staff each time your tablets are due and stress to them that the timing of your medication is important for the drugs to control your condition effectively. The timings of your medication may be different from the usual ward drug rounds. One solution may be for your main nurse to have a pill timer in their pocket that rings when it is time for your medication.
If you experience side effects from your medication, it is important ward staff know about them.
If you have ‘on/offs’, make sure the staff understand that your ability to do things will change during the day. You may need more help when you are ‘off’ than you do when you are ‘on’. For more information see Wearing off and motor fluctuations.
If you miss a dose of medication, explain to the senior nurse on duty how important it is to get your medication on time. Be clear about the impact the missed dose had on your condition. Ask them to report the incident as a drug error and discuss how they will make sure it doesn’t happen again. If you don’t feel comfortable having this conversation yourself, you could ask a family member or friend to talk to staff on your behalf.
You may find it useful to keep notes on who you spoke to, when you spoke to them, what you discussed and what was agreed. After the meeting, follow-up with the staff to make sure what was agreed has been done.
Never feel you are being difficult. Remember, failing to give you your drugs on time makes extra work for the ward staff.
If a particular member of staff will be responsible for your care, request that they be given a copy of the information you provide. It should be possible for key points regarding your care to be included on your personal file by your bed for all staff to see. This will make night nurses and other ward staff aware of your needs when your named nurse is not on duty.
You should tell your main nurse about your usual routine and any specific needs you have, such as help with communication or mobility. You may also wish to provide additional information about your needs, likes, dislikes, and preferences. You should include anything that is important to you – what makes you anxious? Do you have any religious or cultural needs that should be observed? The information you provide can be included in your ‘care plan’.
At home, you may use equipment to help with daily tasks. You should check with the hospital if you can bring these with you. Hospitals will normally have a policy on this. You can discuss this at your pre-admission assessment or during admission with your named nurse.
If you can take your own equipment with you, label it clearly. You may want to add valuable pieces of equipment to your household insurance. If you can’t take your own equipment, check suitable alternatives will be available.
You may find that using new pieces of equipment in hospital makes your stay easier, even if you do not use them at home. New equipment should only be used under the guidance of a healthcare professional, such as an occupational therapist.
Wards can be busy places, even at night. There can also be more lights on than you would be used to at home. Try and stick to your regular sleep routine. If ward staff know your usual routine, they can try and accommodate it as far as possible.
Let the ward staff know about any specific needs you have for sleeping. Do you need help turning over in bed? Do you need to get up several times during the night to go to the toilet and do you need help to do this? Do you need a backrest or plenty of pillows?
Eating and drinking
If you usually have a special diet – thickened fluids, pureed meals or a tube feed for example – this will need to be ordered through the hospital dietitian. You should discuss any specific needs at the pre-admission assessment.
You should also let ward staff know if you use any special equipment to eat and drink with. If you experience ‘on/offs’ and need help at meal times, make sure the staff are aware of this, so they don’t just assume you aren’t hungry. It is important to eat well while in hospital because this will help to fight off infection and maintain regular bowel and bladder function.
You may find it useful to ask your friends and family who visit to bring in extra snacks.
Using the bathroom
It’s important to discuss any concerns you have about using the bathroom at the pre-admission assessment. These may include whether you usually use a handrail or a raised toilet seat, and whether you can get to the toilet without help.
If you experience bladder and bowel problems such as constipation or bladder incontinence, tell the hospital staff so they are aware.
Floor surfaces, furniture and the distances you need to walk will all be different in hospital. There may also be extra people and obstacles to get around which make it harder to move around the ward on your own.
It may be possible to be given a bed that is closer to the bathroom. Using equipment or asking the ward staff to help may also make it easier for you to stay mobile. If you experience ‘on/offs’, let the staff know you may need more help when you are ‘off’.
If you are having specific problems with your mobility, a physiotherapist may be able to help.
If Parkinson’s affects your ability to communicate, make sure the hospital staff know about this. A soft, quiet voice may be difficult to hear on a noisy ward. You may also have to talk more than usual, which may make your voice tired. Some people may take a while to get used to your speech patterns. Lack of facial expression may make staff think you are not responding when they ask you something, so you may find it helpful to explain to staff that you experience this symptom. Tell staff you need time to speak and answer their questions.
Make sure you know how to operate the nurse-call buzzer to get the ward staff’s attention and position it near enough to you so you can use it even if you are ‘off’.
If you use communication aids, bring them to the hospital. If there are times of the day that are particularly good or bad for you, make sure you talk about this with your named nurse. If you are having particular problems with communication in hospital, you may benefit from seeing a speech and language therapist.
Going into hospital may affect any state benefits you receive. This will depend on how long you spend in hospital and what benefits you receive. Ask hospital staff, your doctor or social worker for information on any action you should take regarding benefits.
Surgery and anaesthesia
Anaesthetics are used to put someone to sleep for surgery, and stop you feeling pain and discomfort during the procedure. They work by blocking the signals that are sent along your nerves to your brain, which keep you awake and aware.
Anaesthetists are responsible for giving you the anaesthetic before your surgery, ensuring you are safe and well during the surgery and for managing your pain after your surgery has finished.
There are different types of anaesthetic; a local or regional anaesthetic numbs just a specific area of the body but does not put you to sleep, or a general anaesthetic which makes you unconscious. Sedation may also be used to make you feel sleepy and relaxed during minor, painful or unpleasant procedures.
You will usually meet your anaesthetist on the ward before your surgery. It is very important that your anaesthetist knows you have Parkinson’s and what medication you take for the condition. Some anaesthetics may make Parkinson’s symptoms worse or interfere with Parkinson’s medication. The anaesthetist can plan your care appropriately around this.
You anaesthetist will discuss your Parkinson’s symptoms with you and how they may affect you during surgery. They will also be able to discuss which kind of anaesthetic is most suitable for you, any risks or side effects and what pain relief you may need afterwards.
It’s important you can keep taking your Parkinson’s medication as close to the time of your surgery as possible, and as soon as possible after the operation.
You may be asked not to eat or drink for a period of time before the operation (‘nil by mouth’). But you are usually allowed to keep taking your medication with a few sips of water during this period. Your anaesthetist will discuss plans for this with you before your operation.
If you have Parkinson’s, your surgery may be put at the start of the day’s operating schedule. This can mean that the risk of the surgery being cancelled is lower, for example if other procedures take longer than expected. Organising your medication regimen is also easier if you know what time your surgery will be in advance. It is not always possible to arrange this though, so you should discuss this with the anaesthetist. You should also discuss what you should do if your operation is delayed.
Medication may also be given during surgery if the operation is taking longer than planned and there is a risk of missing a dose. For example, if you usually take levodopa, it may be possible to give the drug using a tube that goes into your stomach. You should discuss this with your anaesthetist before your surgery.
Parkinson’s medications and surgery
Depending on the procedure, you may not be able to take oral medication after surgery. It may be possible to use different drugs, such as apomorphine, which is a strong dopamine agonist. It can be taken by intermittent injection or via infusion, using a pump.
Your healthcare team should discuss the possibility of being prescribed apomorphine after surgery with you before you go into hospital. If this is not discussed with you, ask your hospital care team about this.
If you normally take oral dopamine agonists and are ‘nil by mouth’ due to surgery, you may be switched to a dopamine agonist patch. The patch is applied to your skin and, once in place, lasts for 24 hours. It will deliver the same dose of medication as you would normally take orally. Your specialist can advise your surgical team about this.
Parkinson’s symptoms and surgery
Low blood pressure
Some people with Parkinson’s may experience problems with low blood pressure. Postural hypotension (also known as orthostatic hypotension) is a large drop in blood pressure when standing or changing position, such as standing from a seated position. If you experience this symptom, you should tell the anaesthetist. Having Parkinson’s can cause people to have higher blood pressure readings when lying flat.
Involuntary movements (dyskinesia)
Dyskinesia, that is involuntary and uncontrollable movements, may affect procedures such as x-rays, scans or radiotherapy, when you need to keep still. Radiographers usually have techniques such as putting foam wedges in place to help overcome this, but it is important to talk to your healthcare professional about your movement problems before any procedure. Sometimes for CT or MRI scans, you may need to have a general anaesthetic or be sedated so you are able to keep still.
Saliva control and swallowing problems
Some people with Parkinson’s develop problems controlling their saliva, which can lead to drooling or dribbling. When you have Parkinson’s, the natural tendency to swallow happens less often and saliva can pool in your mouth.
If you have problems with saliva and are having a general anaesthetic, you may need to have a tube put down your throat to help you breathe. This allows the anaesthetist to make sure your airway stays clear during the surgery.
Speak to your healthcare professional if you have any concerns about saliva control or swallowing problems during surgery.
Immediately after surgery, you will be moved to a recovery room and told how the procedure went. As the anaesthetic begins to wear off, you may feel pain or discomfort. It is important to tell staff if you are in pain, so they can provide pain relief quickly before it gets worse.
You may experience side effects of the anaesthetic after surgery. It is common to feel sick or vomit as you begin to wake up. You may also feel cold or shiver, have a headache or feel faint or dizzy. These symptoms don’t usually last very long and you may be given medication for them. Your anaesthetist will discuss possible side effects of the anaesthetic and how they can be reduced with you before the surgery.
Surgery to treat Parkinson’s
Deep brain stimulation (DBS) is the main type of surgery used to treat the physical symptoms of Parkinson’s. It uses one or two surgically implanted medical devices called neurostimulators, similar to cardiac pacemakers. These deliver electrical stimulation to precisely targeted areas of the brain. Stimulation of these areas appears to modulate the signals that cause the disabling motor symptoms of Parkinson's and this can improve control over movement.
For more information see Deep brain stimulation (DBS).
When you leave hospital
Making preparations for going home (discharge planning) often starts at admission. To make sure everything is in place to get home safely, you will be asked for information, such as phone numbers of people who will help you at home.
Before you are discharged, healthcare staff should assess what support you may need when you leave hospital. If any support needs are identified, these should be recorded in a written care plan. You should not be discharged until the support you will need has been put in place.
If you rely on home care services, avoid going home over a weekend if you can do that services are in place immediately.
Check with the hospital pharmacy that you will be given enough medication for when you get home. This is especially important if your medications have been changed during your stay in hospital, as you may not have stocks of this medication in the right doses at home.
Follow up care may include visits from community nurses and therapists. If you are concerned about arrangements for going home after a hospital stay, you may be able to speak to a hospital social worker. It is also worth thinking about how you will get to follow up hospital appointments if your mobility needs have changed – if you are unable to drive for a period of time, for example.
If you have been in hospital for a long time or your mobility has changed, it may be possible for an occupational therapist to arrange a home visit with you before you are discharged. This can help identify activities you may find difficult when you get home. The occupational therapist can suggest special aids, equipment, or other plans to make tasks easier.
Will having Parkinson’s affect my recovery time?
Being in hospital can be stressful and having Parkinson’s may mean you need longer to recover than someone who doesn’t have the condition. If you have any concerns about this, talk to the healthcare team in charge of your treatment or your doctor.
Your healthcare team will talk to you about how your Parkinson’s symptoms may have an impact on your aftercare and create a recovery programme that meets your needs.
If you are receiving hospital care, but do not need to stay in hospital, you are treated as an outpatient.
Preparing for your appointment
Making a list of the questions you want to ask before your appointment will help you feel more prepared. For example:
- What are my treatment options for this condition?
- What are the advantages or disadvantages of the different treatment options?
- How may my Parkinson’s be affected by treatment?
You will usually be asked to bring details of the medication you are taking. You may find it helpful to bring your medication with you, including the bottles or packaging.
If you don’t fully understand something, ask the person to explain again. It is much better to admit you don’t understand than to pretend you do, and then find you don’t know what you need to do when you get home.
You may find it helpful to write down the answers to the questions and any instructions you are given, to help you remember after your appointment. If you have trouble writing, ask the healthcare professional to write it out for you.
At your appointment
You may find it helpful to take someone with you to your appointment for support – perhaps your partner, a family member or friend.
Tell whoever comes with you what you want to talk about before your appointment, so that they can remind you if anything slips your mind. If you have problems speaking or writing, the person with you may also help by speaking on your behalf or taking notes.
If you use glasses or hearing aids, make sure you take these with you to the appointment.
Don’t be afraid to ask questions.
If you are unhappy with your treatment
If you are unhappy with the treatment you receive in hospital, you may want to complain. You should raise your concerns with the ward staff first if you are in hospital.
By complaining, you can improve care for both yourself if you go into hospital again, and for other people affected by Parkinson’s. Don’t worry about how a complaint will affect your future care – hospital staff are committed to providing the best possible care for all patients, and complaining can highlight issues. You may also like to let staff know when things have gone right. If you feel the care you have received was excellent, compliment staff and write to hospital managers when you get home.
Our thanks to Parkinson's UK for permission to use the following source(s) in compiling this information:
- Going into hospital when you have Parkinson's.